THIS ONE'S FOR YOU JACKO.
THIS ONE'S FOR YOU JACKO.
Help us raise funds for a new accessible vehicle for Jackson.
Meet JACKO.
Jackson is 22 years old, and it’s rare you’ll ever see him without a huge smile on his face. Despite many challengers and set backs throughout his life, he’s the most easy going guy, with a love of sports, and the friends & family around him.
Jacko was born a happy, healthy baby, but started declining and regressing at 18 months of age. Initially diagnosed with Cerebral Palsy at age 2, Jacko needed assistance walking, and got his first wheelchair at 4 years of age. He started off at a mainstream school, before moving over to Nepean Special School in grade 3, where he LOVED getting on the bus to and from school in his wheelchair.
Over the years, Jackson’s mum Lauren noticed a decline in his abilities. Everything got harder for him, which also involved having many surgeries. From botox injections to relax his muscles to major spinal surgery to correct his scoliosis, until over time, he stopped walking in his walker and started using his wheelchair full time. By the time he was 16, he was no longer able to weight bare independently, so needed a hoist for all transfers.
Around the age of 10, his neurologist suggested he do genetic testing to see if he may have some other rare disability, as Cerebral Palsy doesn’t usually progress the way his disability had. At the time, the genome sequencing test was very expensive and not readily available so it took until he was 21 to finally get his true diagnosis. Jacko has HSP – Hereditary Spastic Paraplegia. Quite a rare condition that is often mistaken for Cerebral Palsy.
what’s the goal?
Due to his condition, the only way Jacko can get around is via a wheelchair accessible vehicle. He needs to be in his wheelchair while in the car because it is too difficult and dangerous to transfer him, and the car seat is not supportive enough for him.
Currently, Jacko is buzzing around in a 16 year old Kia carnival that's done over 300,000kms... and the thing doesn't have much life left in it. Without a car to get around, Jacko would be unable to get to his day program, appointments or therapies, to see his friends on the weekends, or easily leave the house without specialised taxis!
In Aus, the process of making a car accessible involves purchasing a car, and then jumping on a waitlist for it to be converted into a wheelchair accessible vehicle. Whilst NDIS amazingly covers the cost of the conversion, the car itself isn't covered. And to have a vehicle new and sturdy enough to be converted, you're looking at a minimum of $50k.
We're banding together to help Jackson and his family purchase a new van, which will then be converted into a wheelchair accessible vehicle.
